Survey on the Experience and Stigma of Lung Cancer

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May 2, 2008 - 3:40 pm Dr. West

   Among the many problems with lung cancer that everyone in the lung cancer community experiences is that the field does not receive the attention and the resources it deserves.  And one of the leading reasons for this is the perception that there is less reason to support research to prevent or combat a disease that many people erroneously feel could be avoided by just not smoking.  I think this form of “blame the victim” is a coping mechanism other people use to feel that they have control over an uncontrollable situation, that if they assign causation and blame for a life-threatening problem, it couldn’t happen to them.  But the net result is that many people facing lung cancer not only have to deal with surgery, radiation, and/or chemo: they also need to deal with a stigma of lung cancer that doesn’t exist for victims of breast cancer or leukemia. 

   These perceptions are widely observed but really not well described or studied, and it’s only with greater attention to the unfair treatment of patients with lung cancer that the lung cancer community can address this problem actively and try to remedy it.  Toward that end, a graduate student in the School of Nursing at the University of Washington named Nancy Tennent, who previously worked in the research department of my own institution, has developed a survey to assess the patient’s experience of lung cancer, particularly focusing on issues like societal attitudes.  She is hoping to get input from people here who are actual patients with lung cancer, and the information will be completely anonymous: the survey is done online and will not collect names or any information about the computer or internet location of the responders.  This survey was approved after a thorough review by the Institutional Review Board at the University of Washington (trust me that this is a very protective and conservative group, as someone who has struggled to get research programs approved there), although the link to the survey notes that it is still under review (the wording needs to be updated).

    For those of you who are interested in helping her with this project, which I hope she’ll present and publish in order to shine a light on the social challenges that compound the medical problems of living with lung cancer, you can find the link HERE.

Posted in: Lung Cancer